When you see a teenager who is acting out...Who is getting into trouble... Who is acting disrespectful or is pregnant or pierced in places you don't wish to discuss...what thoughts run through your mind?
If you have young children..or compliant teenagers...or no children, you may be thinking..Where are the parents? What is going on at home? They should do something about their child! If my child EVER acted like that, I would not allow it.
If you have had those thoughts, I want you to know something. I want to tell you where the parents are:
They aren't in bars, never home, uncaring, selfish parents who don't put the needs of their children first. They aren't uninvolved, uninterested or uneducated. And then just add FASD into that equation...the disability that shows itself in negative behaviors but appears invisible to the rest of the world..
And so, where are the parents or kids with FASD?
They are on doing the best they can with children who have been exposed to alcohol prenatally, who wrestle with ADHD, anxiety, depression, past abuse or neglect...
They are on their knees praying desperately for their child...the child that they know...the kind, loving, sensitive and sweet child...not just the one the world is seeing..the rebellious, angry, acting out child.
They are trying to adjust to the new challenges that have been thrown their way because their child has brain damage that will not go away...yet, their child looks so normal on the outside. The world sees a delinquent, while the parent sees a kid with a brain that is not able to think through their own actions.
They are busy trying to get services in place...social services, IEP's, counseling (even if it doesn't help), psychiatrists on their child's team. They are busy jumping through the hoops that are required to get what a child may need in the future.
They are tired. They are tired of feeling like a rotten parent, a rotten employee, a rotten spouse because they are emotionally and physically drained from dealing with a troubled kid. They wait for the phone calls from the school or the authorities with reports that humble a parent beyond what they every imagined possible.
They are busy monitoring all the aspects of a teen's life. They must be hyper vigilant about their child's use of the phone, the internet, facebook. school functions and "friendships." They are busy monitoring unsafe situations that present themselves every day for their FASD teen.
They are busy advocating for their child..constantly educating Teachers, Principals, clergy and social workers who should know, what it means to struggle with FASD....poor executive functioning, poor impulse control and behaviors that are perceived as being lazy, unmotivated and disrespectful.
They are busy doubting their own abilities to handle all that may come there way. They are busy trying to sort out the "big stuff" from the "small stuff." They are busy second guessing their own instincts when the world seems to think they should be able to fix their child's behavior if they just follow three easy steps, or if they would stop letting them eat so much sugar, or if they would just be more strict with them.
They are learning to love their child unconditionally...through the good, the bad and the really ugly...They see beyond the behavior and love the child. They have to..because not many others will. They grieve what could have been before the child's life was changed by alcohol long before they were born. But, they dream for the future...they hold onto hope that their child will learn, will mature in their own timing. They know without a doubt that God sees their child's disability but does not stop there...He understands the struggles, the limitations and the precious gifts and talents he has entrusted them with. He does not see as we see...He sees our child's heart.
The parents are busy helping the world see the child that God created, disability and all. They are busy teaching their child to see themselves as God sees them...created in His image..fearfully and wonderfully made. And through it all..He has a story of hope and redemption to tell. And the ending is filled with a future that only God knows...
...so where are the parents? We are busy loving our kids through it all...
7But the LORD said to Samuel, "Do not look on his appearance or on the height of his stature, because I have rejected him. For the LORD sees not as man sees: man looks on the outward appearance, but the LORD looks on the heart." 1 Samuel 16"7
Wednesday, September 28, 2011
Day +61: Apartment Life
On some levels, he is doing well. Most of his blood levels are better than they ever have been since transplant. His white blood cell count is 5.2 which is nearly double what it was in the hospital. He has had no temps and seems to be feeling really good...he gets tired, but does not let that stop him. He walks up to the clinic visit from the car each day...he doesn't want to ride in the stroller. He is amazing.
One area of concern is his continuing adenovirus. It is still growing in his blood, urine, and stool. He has persistent diarrhea (which could be from a number of reasons.) The numbers of the virus in his blood are more than double what they were at the peak of the adenovirus in the hospital. But, at the same time, he is essentially asymptomatic. He does not have a temp. In the next days, the doctors will decide if he needs to go back on the Cidofovir. That is the med that has been hard on his kidneys during the last course of treatment. If he were to get a fever, he would be right back in the hospital.
Things at home having been heating up. Mark has had to speak with the principal twice this week regarding one of the teenage boys. Those of you who have multiple children with different may be able to relate. When some of the kids have particularly severe issues, the milder kids can fall through cracks..even with us as parents. The child that is having difficulty now, in any other family, may his issues may have been more pronounced (ARND, ADHD.) In our warped world of pretty severe developmental and mental health need kids, he looked really mild. I even slipped into the fantasy that maybe he really didn't have any issues and I was just seeing things that didn't exist. Even though in my gut, I knew that something was not right. But, he was so mild compared to so many of our others. I did him no good by denying the issues that were there...
And then he walks into the Principal's office on Monday morning to report to the Principal that another student should get in trouble for their actions at a football game. He proceeded to explain that he "took the kid down" because the other child kept asking to fight. He was defending his friend. So finally, Brennan just "had to fight him" and wanted to make sure that the other kid got in trouble...the principal was laughing because she had not experienced this situation before...the classic FASD reasoning at it's finest. And that was just the first of a series of issues this week.
I feel sad that I didn't look into medicating Brennan's ADHD. It is tough to get a rebellious 13 year old to start taking med at this point. I did get an IEP and a formal FASD evaluation which confirmed my suspicions. It breaks my heart to see him spiralling down in the last few weeks.
So, I fear that we are now entering the phase of juvenile delinquincy. And he still is just my little boy...funny, sensitive, kind and smart. It breaks my heart...but I am not the first to walk down this path. I am not walking it alone...and that gives me hope.
